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KezzaG
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Re: Invasive Lobular Cancer (ILC)
Hi everyone, I've come into this thread a little late. I've just been through and read all of the comments so my apologies if what I'm saying is a bit out of sync with the where the conversation is at now. I've had regular mammograms since I was 40 (now 48) and everything always came back clear. In 2017 I was called back after a mammogram and underwent a second mammogram and examination which was inconclusive. There was discussion of me having a biopsy but then that was deemed unnecessary. Instead I was sent for a 3D mammogram. The results were all clear. In March 2018 I had another mammogram and was sent a letter from BS advising that it was all clear and I did not need to come back for testing for 2 years. i was pretty darned happy about that! In August 2018 (5 months later!) I found a small lump in my right breast. I wasn't at all concerned and didn't rush to the doctor. When I finally did go (and explained the above circumstances) he sent me for an ultrasound. That resulted in then being sent for an MRI and biopsy. The result was a 2cm lump (as shown on the MRI) and swollen lymph nodes, that my surgeon advised could all be removed with a lumpectomy. Fast forward after the lumpectomy (with me going about my business thinking all was well in the world) and I was called back to the surgeon to be told that I had ILC, 19 lymph nodes were removed, of which 11 were cancerous. Within days I underwent a double mastectomy, to which I was then advised that my tumor was 13cm in size and I had stage 3 ILC. Words can't explain the shock and devastation (as you ladies would all relate to). I have since undergo chemo and have 2 rads to go out of 25. Thursday will be a day to celebrate. But to be honest..... I'm terrified. Treatment will be finished but I have no way of knowing if this disease will be gone. I'm advised by my Onc that there is no further testing other than bloods. I feel lost, out of my depth, emotional and angry. All my family and friends mean so well and they're constantly reminding me of how many rads I've got to go and how it will all be over soon but no-one seems to get it...... will it really be over soon? Stage 3 ILC!, will it come back? how soon? what are my chances? I don't expect any answers to those questions, but I just wish they could understand where I'm coming from. But if I say anything about how I'm feeling then I'm told to stay positive. Sometimes easier said then done. I wish someone had told me about this particular type of cancer and how difficult it was to detect. I put all of my trust in BS and never thought for a minute that their testing was anything but accurate. Thank you to everyone that has posted about this. I've found very little information about ILC so a lot of what has been said here has been very insightful. Thank you all xx2Views1like0CommentsRe: Night Howls
Hoping for some advice..... was always told to go straight to hospital if temp is 38 or over. I'm sitting here with 37.5, raging headache, and a chest cough that's rattling. Do I wait until the temp hits 38 before I go? Don't want to go to the hospital unnecessarily and waste doctors and nurses time17Views0likes0CommentsRe: the day before a bilateral mastectomy
I had a double mastectomy in September. Didn't think I would ever get through it or over it..... I got through it with the support of family, friends and BCNA. I still haven't gotten over it but it does get easier day by day. The first time looking in the mirror is the hardest. I ended up seeing a counsellor and she really helped my put things in perspective. I now try to look in the mirror and tell myself that the cancer is gone, the scars are my journey and I'm blessed to be here. Will be thinking of you today and in the days to come. Please feel free to reach out at anytime. So many beautiful ladies on here to support you xo.9Views3likes0CommentsEye Sight Getting Worse
Has anyone else had their eye sight affected by chemo? My vision has become quite blurry and I can't read a book or newspaper anymore. I spoke to my Oncologist about this and she said it is normal and my eye sight should return to normal once chemo has finished. I still have 3 months of chemo to go and I feel my eye sight is getting worse. Has anyone had to get glasses during their chemo to compensate for this? I'm just not sure if I should get my eyes tested and purchases glasses as I don't know if the effects will worsen over the 3 months or stay the same. Any advise or feedback would be much appreciated. Many thanks xo222Views0likes11CommentsFinancial difficulties
Hi everyone I was diagnosed in August with ILC and have only been able to work a handful of days since my diagnosis. Since I started chemo I've been hospitalised with a blood clot (DVT) in my leg, pneumocystis (PJP) and most recently Clostridium Difficle (C. Diff). I'v had severe fatigue from the chemo and have been an emotional wreck from this entire experience. I've been extremely lucky though that my employer has been so supportive and has placed no pressure on me returning to work and is open to me coming in on any day for however long I can just to keep in touch. They have also generously offered me one months pay ex gratia. My issue is that I have now exhausted all of my sick leave and have only a couple of weeks left of my annual leave but am not in a position mentally or health wise to return to work yet. Foolishly, when I was younger I never opted for income protection on my superannuation so I don't have this to fall back on either. I contacted my Super fund to ask how I could access some funds from my super to allow me a couple of more months before I had to return to work. They advised me that this was dealt with by the ATO with a request for compassionate release of super funds. I went through this process on line and even called the ATO but unfortunately I don't fit into any of their categories to be able to claim compassionate funds. You have to be unable to pay your medical bills (mine are all up to date), have a terminal illness (Stage 3 BC isn't classed as terminal) or be in mortgage foreclosure (which I'm not, but may end up there soon if I don't return to work). The ATO directed me back to my Super fund to ask for financial hardship payment. My Super fund advised that to claim financial hardship, I had to be receiving Centrelink payments for a minimum of 26 weeks. This whole process is so frustrating but is also adding to my stress levels and anxiety. I've worked hard for so many years to make sure I was in a good place with my financial situation but this has just been eroded over the last few months due to BC. I feel like the ATO and Super fund want me to be in complete financial distress before they'll assist but I'm trying to be proactive and avoid getting into that situation. Does anyone have any advice or suggestions? Does anyone know of any other avenues that can be taken to access superannuation?560Views0likes12CommentsRe: Looming double mastectomy
Hi @MaryB83 I had a lumpectomy on my right breast along with lymph node removal on the 21st August. Unfortunately the pathology results weren't what I hoped and ended up having a double mastectomy on the 4th Sept. I was also large busted (18G) and was completely overwhelmed, devastated.... the list goes on. I'm not going to say it's easy at all and the days and weeks after I was an emotional mess. But as time goes on it does get better. I've just had my second round of AC and am struggling with that more than the double mastectomy. I have been fitted and received my prosthesis and new bras in a size D. It actually surprised me how comforting it was to have these and the difference it made in my confidence, although my scarring is still quite sore so I only wear them out for short periods of time. Looking in the mirror has gotten easier and talking to friends and family about how I feel and getting their support has been invaluable. Knowing you are still the same beautiful person to those that you love the dearest has been the most encouraging and supporting words to keep me positive and on track. I also have to remind myself on the tough days that if I hadn't of had this surgery then I may not be here in the years to come.... and that wasn't ever an option. I wish you all the very best and hope that all goes well for your surgery. You will get through! Sending you love and hugs xx Kezza4Views0likes0CommentsRe: Stage 3 Invasive Lobular Cancer diagnosis
Eastmum said: Hi @KezzaG - thanks for tagging me @kmakm - I'm sorry it's taken me so long to respond! I also had regular mammograms and ultrasounds and even when I noticed a change in my left breast (described as 'architectural distortion'), the mammogram, ultrasound and MRI all gave me the all clear, putting it down to 'scar tissue' from the breast reduction that I had more than 30 years ago. It was only when my left nipple inverted several months later and I went back to have it checked again that the changes finally showed up on the scans - though NEVER on MRI - and I was booked in for biopsy. It was only due to an incredibly astute radiographer, who noticed 'something suspicious' on my right breast when I went for that last ultrasound, that my right breast was biopsied also. At that point, there was never any question that there was something going on in the left side but I never had any visible changes to my right breast. Nothing ever showed up on any other scan on my right side and even at the biopsy it was incredibly difficulty for the radiographer to find the suspicious area on the right. The biopsies diagnosed bilateral invasive lobular carcinoma - no lymph node involvement. I was told then, that it was probably breast cancer all along, even when it was put down to scar tissue. With lobular found in both sides I was booked in for a double mastectomy from the start. For me, this was not an issue. I always really loved my boobs but by that stage my left side looked so weird that I was only too happy for it be lopped off - and I just wanted the cancer gone from my body. All the staging scans that I had, indicated that my cancer hadn't metastasised. That was the biggest relief for me, especially knowing that I'd probably had the breast cancer for well over a year. Having said that though, the diagnosis was in January and with my Drs blessing I delayed surgery until April as having it in the school holidays was a better option for me. My surgeon told me that during the operation, he would do a sentinel node biopsy on both sides and if there was any sign of cancer in even one sentinal node, he would do a full axillary clearance on that side. As it turned out, I ended up with a full clearance on my left side. Given that if there was node involvement discovered during surgery and therefore there was always a possibility that I would need radiation, my plastic surgeon was not keen to do an immediate reconstruction at the time of mastectomy. Radiation plays a huge role in the success of reconstruction. I was therefore given air expanders during surgery, and will have a reconstruction sometime during 2019. It really is the biggest shock when you're told that your cancer is a particular size, only to find out that it's much bigger. The 16.8 cms of tumour in my right breast was a huge surprise to everyone - even my breast surgeon - and that was in the breast that hadn't shown any sign of cancer. All I could imaging was a 30cm ruler and thinking - wow, that's more than half a ruler! Fast forward to October - I've now finished AC-T chemo and have started radiation. Even though my body was officially cancer free after surgery, with a few nodes coming up positive, my cancer was also stage 3. There is discussion over whether chemo actually has any effect on lobular cancer, but my medical oncologist recommended it and really, all I want to do is to throw absolutely everything at this disease to minimise a recurrence (no guarantees, I know). You didn't mention which chemo you're doing? I'm guessing it's 4 x AC (either two or three weeks apart) and then 12 x weekly taxol? I did have a range of side effects - from a chronic dry mouth, nose bleeds, fatigue etc but I was incredibly fortunate throughout chemo and was able to function normally and didn't need to take any time off work. You'll find a ton of different chemo experiences on this forum and each and every one of them is 100% normal so it's really important to know that whatever you experience is absolutely OK. If you find that you need to stay in bed for a few days then listen to your body and do just that. Eat and drink what you crave, rest when you need to, exercise if you can - just do whatever gets you through. It's such an individual journey for everyone and never feel the pressure to be 'amazing'. Whatever you can do is fine, and if you're feeling crappy, that's fine too. You have to give yourself permission to feel crap sometimes :) It was really confronting for me to lose my hair - and then my eyelashes and most of my eyebrows - but they will all grow back. Actually, my head is already starting to grow 'peach fuzz' just three weeks after my last chemo. I choose to wear a wig because that's what gives me self confidence, and there are many people at work who don't even know I had cancer. I'm 2 days into my 6 weeks of radiation and so far, it's absolutely fine although I know it's very very early days. My cancer was really close to the skin margin so my radiation oncologist has said that she 'wants to see a skin reaction' - Yay! (LOL). My cancer was 100% ER and PR positive so I'll be on years of hormone therapy after radiation. If it truly further reduces my chances of a recurrence I'll do whatever I need to. Emotions are like a roller coaster. I'm a really pragmatic person so from the outset I've been like 'OK this is what's happened, what do I have to do' - and I guess I haven't really given myself a chance to process it all emotionally yet. I find though that it gets to me when I'm least expecting it. I'll suddenly have a weeping or teary moment for seemingly no reason at all. I consider myself one of the luckiest people on earth to have an excellent prognosis when I know that so many people don't. I feel so fortunate to have something treatable (even curable I guess), with no apparent metastasis; to have decades of medical research and tens of thousands of warrior women that have paved the way, and to live in a country where we have the highest rate of breast cancer survival in the world. Like you, I am blessed with a wonderfully supportive family and amazing friends, and I also have an incredibly supportive employer and easy access to medical resources. I don't take ANY of that for granted because I know that there are so many men and women (many of them on this forum) who do not have that. This forum has been the most incredible support for me. I've taken a bit of a break from being active on here for a while as I've had so much going on (and after a full day of work and coming home to make dinner etc for the fam, I've been collapsing into bed and fast asleep much earlier than I used to!) but I'm looking forward to giving back a lot more soon, as it's been so wonderful for me. There's always someone on here night and day to chat to, or if you just want to download about how you're feeling. Wishing you only everything of the best with your treatment going forward. There is always a light at the end of the tunnel, just keep moving towards it and you'll see that step by step you'll get through. Lots of love, Yvette xx Hi Yvette I just wanted to thank you so much for responding to my message. Everything you said has made an impact on me and has resonated with me in some way. You seem so positive and I'm hoping to get to that point to. At the moment I'm really struggling with my emotions and every day seems like a roller coaster ride. I'm going to get there though and will continue to fight. Thank you xx0Views0likes0CommentsRe: A time capsule for my nauseated friends
Thank you @"Summer Prevails"..... such a beautiful reminder of what to look forward to. I've just finished my second dose of chemo and whilst I'm so lucky that nausea hasn't hit me as hard as you, the shower is still my place to relieve the aches and pains and also my own private place to cry as much as I like. Especially after having looked in the mirror to see the scars, the flat chest and no hair. Your message was a timeful reminder of what the future can hold. Thank you xx6Views0likes0Comments
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Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.
